“That’s not really why I haven’t written.”
It has been one whole year since I learned that I had cancer cells in both my right breast and my left ovary. It’s news that sits you down pretty quickly. There are days in your life that you know you will never forget and yet when I think about that day, its all kind of foggy, full of a bunch of words and terms that I knew nothing about and had never ever heard before. I remember Paul and I leaving the surgeon’s office and standing outside on the street holding one another. We both cried. I cried because I knew what I had heard her say to us, in the most gentle way she could, and I think Paul cried because I did. Dr. Lipp didn’t actually say the words, “You have cancer.” She called it what it was “granulosa cell tumor – adult type” and she said things like “rare” and “favorable prognosis”. She said that I would be referred to an oncologist as they would have more experience with how it should be treated. I did know at that time that I would need to have another surgery, that was about all we knew, but I heard what she said. She said, without using the words, “Shelley you have cancer.”
When we got in the car to head home, I was googling the term “granulosa cell tumour”. Paul was being very quite. He had even turned the radio off, which was very uncharacteristic of him. By the time we had pulled into the garage, I had read statistics on life expectancy of women with ovarian cancer and I was numb. The stats are not good. Paul assured me everything was going to be okay and I even recall him saying, “well she never said it was cancer.” Hope is the most blessed thing. When you are full of hope, fear can’t even take over. At that moment, I loved him for choosing to not hear what wasn’t said that day at Dr. Lipp’s office.
It was also blessing that my dearest friend Donna was at my house visiting from Winnipeg. Her trip had been booked a couple months prior and so it was just by the grace of God that I had her and my family’s arms to fall into when I headed inside the house.
At this point, I already knew I had cancer cells sleeping in my right breast and that I would soon be scheduled for a double mastectomy. But I had no idea what it meant to now have cancer in my ovary as well. I needed to learn more, everything I could about cancer and how to assure it wouldn’t grow inside my body. I was steadfast in learning every single thing I could about Adult type granulosa cell tumour ovarian cancer and ductal carcinoma in SITU breast cancer. It was terrifying, and at the same time, I was too busy researching and figuring out what to do to really be scared.
It’s now a whole year later, as I sit here today, so much has changed. To say there is no fear would be a blatant lie, as I think I have more of that now than I did then. The thing is fear is not really beneficial unless it is what keeps your engine moving in the right direction. Like for example, if you are running from a bear, that fear could be just the fuel you need to run faster than you ever have before.
My fear now comes from the clarity that I have about so much in my life. I am so clear on how I spend my time and with whom. I am so clear about what it means to show up, both for yourself and for others. People showed up for me this year that I never expected and really cared in the biggest and smallest of ways. There are some people I hoped and prayed would call or text who just didn’t and I have spent more time than I was allowing myself to trying to figure that out. I have learned that showing up is hard, especially when cancer is involved. It is really one big scary disease that I’ve also learned, NO ONE really knows anything definitively about. Either way, whether people showed up or completely surprised me by showing up or didn’t show up at all, the past year has been a front row seat for the lesson on “showing up”. I for sure, will be better at this in my life.
I typed this blogpost the first time, about a week ago, and before posting it I read it to my daughter Alyx. When I was done she said, “Well Mom, it’s good but I don’t think you are really being honest.” She said that she thought I needed to maybe write about why it had been so long since I made a post. I went on and on about how I hadn’t posted anything for so long, because I was tired of it. Tired of recovering, tired of having issue after issue. I thought people would be tired of it too. I just wanted to try to focus on what was normal in my life and not was hurt or didn’t work properly anymore. Then when I was done rambling on and on, I said with tears in my eyes…
“That’s not really why I haven’t written.”
On August 18th, 2018 I lost my friend Silke to this fucking disease of cancer. She is my hero. My last visit with her was in palliative care in what would be one of the last days of her life. Silke’s husband Doug had prepared me to see her and encouraged me to go and be with her. The room was dark so that no light would cause her any more pain than she was already suffering from. Her son Travis and I whispered in the quietest of voices as we talked about how to position her for the most comfort. I sat quietly on one side of her bed and Travis on the other as she rested there, a mere shadow of her once strong athletic self.
I met Silke in 2008 when I took up playing Ringette with the Rink Ratz in Winnipeg. One of the best things I ever did, as many of those women are still very dear and heartfelt friends, I loved playing with Silke. She was a fierce competitor and loved to win. She was a great skater and had an amazing shot. What I loved most about her though was our visits on the bench and in the dressing room before and after games. She loved to laugh and she thought I was funny. To anyone who likes to make people laugh, if you laugh at our jokes, we love you! Silke was always laughing at my stories. We gravitated to one another and always seemed to end up beside each other, whether it was in the room, on the dance floor or in the lounge after a game. We took a trip to Las Vegas as a team in 2010 and some of my favourite memories are of Silke and they still make me smile today as I think of them. I’d love to share them, but, you know… what happens in Vegas… 🙂
Although I adored my time with Silke we really only saw one another at our ringette games and team events/trips. Then, at this exact time last year, Silke reached out to me to tell me that she too was going through a battery of tests and scans. We talked and texted and facetimed very regularly. It helped us both with the fear of it all and it kind of doubled our research for one another as I was telling her what I was learning and doing and she was telling me. Silke however, had been diagnosed with Stage 4 glioblastoma which is a very aggressive brain cancer. We shared books, food alternatives, pain alternatives and called one another in the middle of the night when everyone else in our homes were sleeping and we told each other all the nitty, gritty of what was going on in our bodies, minds and in our hearts. I knew her ordeal was completely different than mine and I did all I could from afar to support her and her family. The thing is, she was always as concerned about how I was doing as she was about what was going on with her too. The bond that we shared during those 8 months is so incredibly special to me.
My last visit with Silke. How do I even begin to explain it to you? It had been a couple of days since she had been able to talk. Doug had warned me of that but said to keep talking to her. Her pain was so bad, that when she did actually wake that day and begin talking to Travis and I, you had to move your ear very close to her ear just to hear her words. The extraordinary thing is that even in that “barely a whisper voice”, she made us laugh! She hadn’t physically seen me since my bilateral mastectomies and once she realized I was there, she said “Your boobies! How are your boobies?” and she reached her one good arm up in search of them. Then for the next few minutes she literally felt around my chest, moving back and forth, so happy for me that I had breasts growing once again. She sang to us, joked with us and as she always had done made both of us feel a little better. All this is the faintest, slowest voice you could ever imagine. Somehow, that day I left my friend’s side knowing that it would be our last visit, and yet I was smiling ear to ear as I walked down the hall towards the elevator. I’m so grateful to have been your friend Silke.
Right after Silke’s service, I began a long drive home to Vancouver, BC from Winnipeg, MB. I had a picture of Silke and my dog Mischa with me. My son in law Eduard told me as I was heading out about a belief in his Russian culture. He said that it takes a number of days for the soul to leave earth and in those days Silke would still be with us and so I could talk to her all the way home on my drive. So that’s what I did. Each hotel we stayed at, I’d prop her picture up once we got there and during our long drives I continued to talk to her, cry with her and pray for her and her family. In fact, Silke’s come along with me on several trips since then… Austria, Florida, Nashville and Maui. Last year for Mother’s Day my daughter gave me a necklace that says “I Get To”. It is a reminder that you’re alive and well and living. That necklace and Silke’s memory make me feel the same way. Grateful. Because I get to, I have kept her spirit alive on my journeys and pray that she knows how loved and missed she is.
So, when you lose your friend to a terrible aggressive cancer and you are just dealing with a body that has issues from when your expert doctors were able to go in and remove your tumour and your cancer cells, somehow you don’t feel worthy of blogposts anymore. What was going on with me just didn’t warrant my, or your, attention anymore it seemed. I put my writing away and tried to just live. None of that was a conscious decision, it just happened and when my Alyx asked my why I really hadn’t written since August, I finally allowed myself to feel just exactly why it had been so hard.
We have a very modern family. I am married to Paul and he has three daughters; Lindsay, Jessica and Katrina and I have three daughters as well; Alyx, Kenzie and Danika. When my daughters Dad, Al comes to visit us from Winnipeg, he stays with us in our home. I am so grateful that we have remained friends and that Paul and Al have such respect for one another. When Al was here over the holidays, I shared some of my writings with him and he encouraged me to write again. Even when he got back home to Winnipeg he reminded me of how some things raise a person’s frequency and he suggested that writing may do that for me. So, although it has taken me a week, I am back writing again and it feels good.
2019 begins as a year of rebuilding, renewing and staying diligent. January is the month of my first surgery of the year. Tomorrow I will have a surgery to repair my bladder. It will restore normal function of my bladder which has been an issue since my hysterectomy in February 2018. Now this is almost as bad or worse than the “c” word to talk about. No one talks about it and no one really wants to hear about it either. I have found it hard to express, even to my husband or maybe especially to him and to my family. I have some girlfriends (you now who you are) who have been a saving grace with this one as so many women struggle with incontinence after bearing children and even just with age. It was wonderful to connect at this level with friends this year as I felt somehow supported just to know that others sometimes pee their pants too! At this point, I keep a change of clothes in my car as you just never know when the nearest bathroom will be just too far away. I’m pretty stealth about it so I don’t think many people would even suspect it but honestly this January 9th day, couldn’t have come soon enough!
(wow… I actually typed that, yay me! Been avoiding that subject for 10 months!)
The next rebuild will be my breasts. Believe it or not, I STILL have the expanders in. It has been just over 9 months that I had my bilateral mastectomies. My right breast was the breast with the DCIS in it and when they went in to do the surgery, the breast was full of suspicious tissue so they took a lot out including my nipple and scraping my ribcage,as well as lots of surrounding skin and tissue. Because of this, inflating the area to prepare it for an implant has been difficult. The skin is extremely tight and has reacted in many different ways to the biweekly saline fills. Sometimes, it is little bumps and sometimes it gets really red and inflamed, Occasionally I’ve been on an antibiotic to settle it down. Through the whole process, I have tried to trust my surgeon and oncologist who have both said that I will be happy once it is all over. Everyone says that expanders are the worst part. Usually it is only a 3 month process, so going 3 times that hasn’t exactly been fun. I can hardly wait to wear normal clothes again, lay on my stomach one day and… hey, how about a massage? A real one, where I get to put my face in the little hole. That will be nice. (The not wearing a bra gig is pretty awesome though. How will I ever go back!?)
I have continued to have regular 3 month monitoring for my ovarian cancer. Which I should remind you is, of all the ovarian cancers, the best one to get. I have a great prognosis for a long life but will be continually monitoried for the rest of my life for reoccurances. So far. so good. The monitoring includes a trip to the BC cancer agency for a routine check up, blood work which I have been getting in the states for GCT tumour markers and just recently I have had a CT Scan and ultrasound, I haven’t had symptoms and my tumour markers are virtually zero so that is all good, however I have had miserable pain in my hips and low back. My CT scan shows residual spots from when I had the clots in my abdomen after my hysterectomy. Dr Brar suspects these are from the clots but will do a follow up MRI in March once I have the expanders in my breasts out. Each expander has a magnet in it, of which I reminded him when he was scheduling my MRI for me. Would not be a good idea to go into that machine now.
When people ask me how I am doing, I ordinarily reply, “I am great” In fact, I am really good! I have fought off two cancers this year… that’s pretty freaking amazing! However, my body is a bit of a war torn zone. Nothing really works like it used to. So the honest answer is “I am amazing, but a bit broken.” I hope that 2019 will be the rebuild, renew and remain diligent year. In the meantime, I cannot thank you enough for being there for me in the littlest or biggest ways. It really has made all the difference. I mean that from the bottom of my heart.